The following article Vuyiseka Dubula-Majola: 'My anger fed my activist's soul', written by Biénne Huisman, was published in the Daily Maverick on 2 December 2019:

Vuyiseka Dubula-Majola believes fighting injustice is everyone's business. She's been at the forefront of social justice activism for most of South Africa's new democracy, not only as a role model for those living with HIV, but for those trying to overcome inequality.

When Stellenbosch University offered her a job, Vuyiseka Dubula-Majola was circumspect. Why would she take up appointment at a white male-dominated institution, shackled by slow transformation in an elitist town?

Then she took on the challenge to become the transformation she wants to see. On 2 January 2018, Dubula-Majola stepped into her new role as director of the university's Africa Centre for HIV/AIDS Management.

“Of course I am not naïve that Stellenbosch University has a long way to go to transform," she says. “I know that I am uncomfortable being here, but it's a challenging discomfort. We cannot as activists always work for – or inside – institutions of comfort. Discomfort can be the push we need to change the world."

Behind her desk, she leans back. She lifts a hand, smiling. “My dean, Ingrid Woolard, she is the university's first female economic and management sciences dean. She knows my feelings on transformation, we discuss these things."

Dubula-Majola is no stranger to the centre she now heads. She completed her MA in HIV/AIDS management at Stellenbosch University, and lectured there part-time in the years leading up to her appointment. Her PhD, from the University of KwaZulu-Natal, examined “grassroots policy participation, after a movement has succeeded to push for policy change". The study's sample sites were Khayelitsha and Lusikisiki, two pivotal places in early antiretroviral rollouts in South Africa.

Dubula-Majola considers herself an “activist-scholar" who will always be an activist first. Her passion is to help HIV positive people, especially women. Inside her office, windows look out over tree-lined lawns. Against the walls are framed African proverbs. “When spider webs unite, they can tie up a lion," reads one.

During the interview, Dubula-Majola continuously refers to “we" – by which she means the Treatment Action Campaign (TAC). After being diagnosed with HIV in 2001, the TAC became a home to her. A key figure in the movement's fight for free antiretroviral drugs in South Africa, she would go on to serve as its general secretary for six years. In 2014, she joined Sonke Gender Justice as director of policy and accountability.

Dubula-Majola believes fighting injustice is everyone's business. “You know how the saying goes," she says. “If there is an injustice next door; if a man is beating his wife and you keep quiet, one day, someone will beat your own daughter, and people will keep quiet."

Growing up in a village near Dutywa in the Eastern Cape, Dubula-Majola was an ambitious youngster. “I wanted to go to school, I wanted to become something in life as I came from a very poor family. My father was a taxi driver in Cape Town. We didn't see much of him. About two weeks at a time, and when we did it wasn't good."

After moving with her mother to Philippi on the Cape Flats, Dubula-Majola worked as the family's breadwinner at McDonalds in Green Point. During this time, in April 2001, she decided to get tested for HIV at a clinic down the road from the restaurant.

“I went in confidently; curious, but confident," she recalls. “It was a 25-minute wait. The longest 25 minutes of my life. In fact, I was considering to leave, to go to the loo and not go back. I saw the results before they told me. In the councillor's book, my result was written in red, everyone else's in black. It was the worst news. Afterwards, I'm not sure how I got home. I'm not sure how I crossed those busy freeways, I just walked through the city. And somehow got home.

“Then I had to return to see how badly my immune system had been compromised. I found out that my CD4 count was 250. That means it was too low, my immune system had been severely compromised." (AIDS is diagnosed when a CD4 count drops below 200. A normal range is between 500 and 1,500.)

What further shocked Dubula-Majola was being told that there was no life-saving medicine available to her, as she could not afford it.

“I was depressed for two months. Waiting for my death, which didn't come. And I mean literally, each day I was waiting to die, I was losing one CD4 count a day. I saw how I was going to die through other people around me.

“In June 2001, some of the things my councillor told me started coming back: that I could go to MSF – Doctors Without Borders – in Khayelitsha. That they were starting to set up an HIV clinic there. I went.

“So after months which were all about me, here I met these people who were HIV positive too. I met this one woman who had an HIV positive child, but she was full of life and encouraging people. She connected me to the TAC, and suddenly I had a home. Literally, from that day when I was introduced to the TAC, I never looked back. At the time I was working shifts at the McDonalds drive-through. So if I was working the night shift, I was at the TAC offices in the morning.

“This helped me to refocus, because I was eating myself up. I had new energy, fighting the system instead of fighting myself. We were reimagining the system, even though we knew some of us would die. I was willing to die fighting.

“As a 22-year-old, I did not have fun, there was no time to dream. I was fighting for my life and the lives of others. I never thought I would have children, I never thought I would get married, I never thought I would love again. Because there was also the issue of who infected me, how did this happen? You start resenting relationships."

The TAC confronted pharmaceutical companies and South Africa's then Government in their fight for life-saving drugs, basing their arguments on human rights.

As an example, Dubula-Majola points out Fluconazole – a drug crucial to treating mouth thrush, a common symptom associated with a compromised immune system or HIV. At the time, Pfizer had sole distribution rights of the drug in South Africa. Sold by Pfizer, one Fluconazole tablet cost R78. After international research, TAC leaders found a generic bio-equivalent in Thailand, retailing at 24 cents.

“So government wasn't willing to negotiate with Pfizer to drop their price," says Dubula-Majola. “This particular drug was available in South Africa, but only in the private sector, only for those who could afford it. According to the World Trade Organisation, though, people in developing countries were allowed to buy drugs where it's cheaper – if they couldn't afford prices back home.

“So we went and we visited all these drug companies overseas, and we found these generic drugs in Thailand. Zackie (Achmat) and some others went to Thailand to get 6,000 copies of the drug. Returning to South Africa, they were stopped at the airport of course. Officials confiscated 3,000 of the copies, which they took to the MCC – the Medical Control Council – to be tested. The other 3,000 copies were left with Zackie and eventually they were released. People started getting treatment for thrush, and that was the story."

In a 2014 TedX talk in London, an inflamed Dubula-Majola told the audience that pharmaceutical companies are evil. Does she still feel this way?

“Yes," she says, pausing to think. “Well, not all of them. Look, everybody's in that business because they want to make money. I've accepted that. But I think these days some generic manufacturers actually aren't making money out of ARVs or HIV drugs – because we have pushed prices so low. Which is good. They can make money off other drugs, for other exotic things. When it comes to life-saving drugs, I think they must be prepared to be challenged."

In the same TedX talk, Dubula-Majola said that she is angry – angry with her father, angry with her government, angry at everyone. But that she has used her anger to drive her work.

“Anger is a powerful source of power if used positively," she says today. “I mean, without feelings or emotions, how does one become an activist with fire? Being diagnosed with HIV at my prime age, as well as being told I was too poor to be treated, that made me angry. I used that anger to feed my activist's soul, to look for solutions."

Aged 41, Dubula-Majola lives in Landsdowne in Cape Town's southern suburbs with her husband Mandla Majola, and their children, aged six and 13. Their children are HIV-negative.

Dubula-Majola is a regular guest on global health panels around the world. On her daily commute to Stellenbosch, she listens to SAfm. She is hopeful, saying that movements like #metoo are lessons in global solidarity. “Young people today must grab the mic, they must not apologise," she says. “They must be a loud voice, making our societies more democratic."

On continuing the fight against HIV, she adds: “Don't wait for the politicians. It is up to HIV positive people, and those who want to remain HIV negative, to steer towards an AIDS-free generation. We must stop complaining, thinking politicians will do everything for us, and do it ourselves."

• Photo: Vuyiseka Dubula-Majola, Director of the Africa Centre for HIV/AIDS Management, Faculty of Economic and Management Sciences, Stellenbosch University